Lymphoma

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    What do you find to be the most challenging about a cancer diagnosis?

    Getting a cancer diagnosis is many things — heartbreak, anger, pockets of simplicity, grief, even gratitude. But there are parts of it that straight up suck.

    What’s been the #1 challenge for you or a loved one?

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    What advice would you give someone recently diagnosed with cancer?

    Being diagnosed with cancer can certainly be scary, confusing, and frustrating — just to name a few of the whirlwind of emotions that may come up.

    If you could give any advice or words of wisdom to someone newly diagnosed with cancer, what would you share?

    🎧 🎙️ If you're up to it and would like to listen, feel free to check out this Mighty Podcast episode on what it's like living with a rare cancer:
    Living With A Rare Cancer

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    Remission

    #Cancer
    Following CT scans that my GP/MD organised for me; blood tests and a consult with my haematology specialist last week, I can reveal I've now passed the three year mark as far as my remission is concerned. I was diagnosed with High Grade B Cell (non) Hodgkin's lymphoma in September 2018. This was considered to be a relapse from lymphoma I had in 1992.
    I will continue to have six monthly check-ups and I think annual CT scans. I'm allowing myself to become a little excited despite my my complex mental health issues issues! I'm on track to pass the golden 5 year mark, when 50% of lymphoma patients are considered to be cured.

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    During trestment

    And after #Cancer #lymphoma #MentalHealth

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    Introduction #Undiagnosed #Anxiety #Stigma #ChronicPain #ChronicIllness #MentalHealth

    Hi everyone. I'm new to this group, but have been on The Mighty for a little while. I am 41 years old and currently struggling to get a diagnosis for many of my symptoms. My history of mental illness has caused a lot of bumps in the road. I have been told that my symptoms are from stress so often. One recent serious example was a year and a half ago when I saw my primary care doctor for shoulder pain. After 6 months of trying to prove my symptoms were not anxiety, I got a new PCP who referred me to ortho. They found tears in both rotator cuffs and severe biceps tendinitis. I had surgery on the left in November and am having the right done this summer. Another issue has been the fact that I am losing weight unintentionally and no one seems to care because I am still overweight. I have lost about 45lbs since August while getting enough calories to maintain my weight.

    I currently have a bunch of different diagnoses, but I have symptoms that have not been diagnosed. These include chronic widespread pain, muscle spasms, tendon pain, headaches/migraines, lightheadedness/dizziness, nausea, swollen lymph nodes, brain fog and cognitive symptoms, sleep problems, tachycardia, and fatigue. This is not a comprehensive list.

    I have seen a neurologist who did many tests, but no diagnoses besides migraines (and what's left of the carpal tunnel after having surgeries). The gastroenterologist, who did not want to do a colonoscopy, found a pre-cancerous polyp and hiatal hernia, but no inflammation or cancer. My lymph nodes were biopsied and negative for cancer and lymphoma. I asked for a referral for rheumatology a number of times, but was denied because my "blood work looks normal." My PCP also denied to test my vitamin levels (besides vitamin D, which I have been known to be deficient) because I "eat well." The neuro tested my vitamin B-12, but there are a lot of vitamins and minerals that I could not be processing properly.

    Most doctors just want to cover up my symptoms with medications. I want to know what's causing the symptoms. It's frustrating to feel awful and have to keep fighting every step of the way. I had never been good at asking for what I need, but I am finally doing it despite all the anxiety and fears.

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    When Caretaking With MS Takes It’s Pound of Flesh

    It has been seven months now while on this journey called cancer. My husband’s lymphoma resurfaced this past late August. This stormed into our lives and took all that we were beginning to regain, as covid restrictions were being eased. I then, was placed in the drivers seat, and not the one we sit in for a lovely car ride.

    What can I say, as this is not a choice. Thankfully, my DMT was changed from Tysabri to Ocrevus a year prior, and this made all the difference as Ocrevus has been a life changing medication for me. Through the demands of caring for all the parts of living that Cancer demands, I have been able to remain stable until recently.

    Stem Cell Transplant is all consuming, as it requires a strong caretaker to step into many shoes in order to get through the process well. Our situation required moving temporarily to another city for several weeks, of which we are still here, but are being released home next week for one month. I am thankful that our hotel is just around the corner from the hospital, thereby making my during my husbands three week hospitalization easier. I lugged laundry to out hotel’s one small washer every two days, and hauled it back as my husbands clothes being clear were a vital priority to keep bacteria down to a minimum. I made drink runs and miscellaneous runs.This may not seem like a big deal to those who don’t have a physical challenge. For me, using a cane has become part of life, though on good days, I don’t use it, however, keep it nearby. Carrying anything with a cane is a challenge…Especially through the maze of a parking deck, then through to the hospital, elevators, steps, and down a corridor and into a hospital room. I certainly got some exercise.

    Caretaking was greatly appreciated by hospital staff, so it was helpful, though not required, though suggested, to help with showering, daily full body wipe downs with antibacterial special wipes, sheet changes, encouraging liquids, advocating, assisted hall walks, counseling when spirits rose and fell, etc!!! For near three weeks. The enormity of a stem cell transplant can be educated, but we had no real idea until it all began…which from the start before hospital admission were daily appointments and procedures to prepare.

    Then the discharge to hotel transitioning to daily outpatient appointments began. However, with no immune system, severe fatigue, and an uninvited lung infection complicated recovery. Now, we are preparing for our move back home. Now, I am feeling the affects of the last seven months of Chemo, tests, procedures, biopsies, family and friend advocate, running a home, an apartment property, and the care of my ill husband.

    MS, took a back seat, as it had no choice. My symptoms have resurfaced, and there have only been a few who have even asked how I am, as my husband needed to be first. MS seems distant, but ever present, but has no voice and no place, and must remain in the shadows. How do I take care of myself?

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    #weightstigma #Fatphobia #anxietystigma #MentalIllnessStigma #Undiagnosed

    Over the last 7 months, I have lost about 40lbs unintentionally. I am still overweight (about 30 on the seriously antiquated BMI chart). I also have a lot of other symptoms including swollen axillary lymph nodes. Four months ago, my doctor authorized an ultrasound and a biopsy was done. It returned results of no cancer or lymphoma. Since then, I saw a gastroenterologist who put me on a low FODMAP diet for IBS, refusing my request for a colonoscopy because I had a clear one 6 years ago. I said that I have new symptoms, but he wasn't convinced my problem isn't anxiety/food-induced IBS - mixed c/d. I did the diet with very little change in symptoms. At my follow up, I asked for a colonoscopy, and he gave me excuses why I am fine. I asked about the weight loss and he said, "Well, at 168, your BMI is still..." and then I cut him off. I said I didn't want to hear any talk about my BMI. I am losing weight unintentionally and fairly quickly. The fact that I am overweight is irrelevant. I yelled at him until he said he'd order a colonoscopy/endoscopy. Luckily, a different doctor will be performing it. My primary also doesn't seem to care that I am losing weight. She refuses to refer me to rheumatology because my "bloodwork is fine," even though I have symptoms of a possible autoimmune disorder. My therapist even called my PCP and asked her to refer me, but she won't until the GI is done with what he's doing. I am having symptoms unrelated to GI and there are waitlists for most providers who accept my insurance. I don't understand why I have to wait when my insurance doesn't require it and I am suffering. I've spent the last 18 months trying to get care for my pain and symptoms. It took me 6 months and changing providers to get a referral to ortho and neuro because all my symptoms were blamed on anxiety. I am still being held back because I have mental illnesses and am overweight. I'm tired of all the stigma and bigotries in medicine.

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    There is joy in the journey

    I am a 3 time cancer survivor. I developed breast cancer in my early thirty’s. I had a bilateral mastectomy. In my forties I developed thyroid cancer and had my thyroid removed with radiation. In my early fifties I developed Diffuse Large B Cell Non-Hodgkin CNS Lymphoma. I had five and a half months of chemotherapy (high dose). My tumor required surgery but the neurosurgeon was not able to get the entire tumor. I had a brain tumor in my cerebellum. I this had a craniotomy. My balance and memory were affected. Following my chemotherapy I had a stem cell transplant. I have been in remission now for a year and a half. I am thankful to be alive!

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    I’m new here!

    Hi, my name is kerya. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether Natasha lymphoma I didn’t start any treatment I’m just afraid

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    Worst week of my life so far part 1 #Autism #nvld #neurodivergent #Depression #SuicidalIdeation

    Exactly a week ago my life came crushing down and I feel like there’s no way out.
    First my aunt died from lymphoma in August and we got her cat that I loved more than anything else. Sadly she stopped eating at the start of this month and had fatty liver disease, we only had her for 3 months. The emergency vet put her on a feeding tube for 3 days but she was refusing that too. We think she was depressed because my aunt and the her whole family she lived with are dead. I wanted her to stay alive but I could tell it was the end because she couldn’t move far and peed on herself. My mom felt it was time to let her go and called for someone to come to our house to euthanize her. I was sad because she was still eating treats but saw that it was time too so I was there at home, alone when the sweet animal hospice vet came to end her suffering. I begged her to stay with me and asked got to take me instead of her. After it was done I had to work at my part time job and had to explain that I was late because I was crying in the car and that I was depressed because I felt guilty over her death. The next day I did not want to go to my full time job but I had to and I tried to keep myself together but my guilt was too strong. I was stressed from the people there and lashed out, I was sent home for being overly emotional 😭
    The rest of the day I just hid from my stepdad and got all my cries out.
    I thought that would be it for my sadness for that week but the worse was still to come and something I did this day would lead to a bad end for a chapter in my life.